Often, the homecare nurse will encounter that once-in-a lifetime individual who has decided to take on the huge task of being the primary caregiver for an ill family member. Their motivation may vary from person to person. It may be financial, concern for the quality of care, or just wanting to be physically present for their loved one, whatever the reason, they have taken on a most difficult task.
After assuming primary responsibility for the care of their family member, it does not take long for the reality of the situation to hit home. Lack of sleep, frustration, isolation, not to mention exhaustion, conflicting feelings of fear, resentment and anger, not only at the patient, but at other family members, who are now perceived as not contributing enough, can quickly erode the caregiver’s ability to provide the kind of care they originally set out to provide.
For the home care nurse this poses a bit of a problem on several levels. At some point many of us are faced with the unpleasant task of saying to the devoted person, that they are in way over their head, and it is time to let someone else step in .The initial reaction may be anger and denial, I have heard people say things like, “nobody else will take care of my mom like I do.” The caregiver may also be feeling guilty that they would even consider allowing someone else to take care of Mom, or to compound the internal conflict even further, they may experience relief that someone has noticed how exhausted they are.
Most people feel that admitting they cannot take care of Mom or Dad alone anymore, is equivalent to being uncaring or indifferent towards them. By helping the caregiver understand that Mom can get better care if her caregiver isn’t on the verge of collapse may help the caregiver to surrender some of the responsibility to someone else. And then encourage the caregiver to ask other family members for whatever assistance they can provide, no matter how small. For instance, if Mom is in Boston, and the caregiver’s other siblings all live in New York, setting up a rotating weekend schedule may help. And creatively reassigning tasks to others can also lighten the load. If Brother Billy lives in California and can’t rotate a weekend, maybe he can make sure that the household bills are paid instead.
Eventually, even the most well-coordinated and helpful of family members may have to admit it is time to call in for back up with hired help.
Fortunately, the realm of home care has opened up many possibilities of different levels of accepting help. We no longer have to offer our patients only the two options, full care from family, or off to a nursing home. Many times, convincing a family member that it is ok to allow a home health aide to help Mom in the middle of the night is a major hurdle. Offering someone the possibility of an uninterrupted night of sleep can seem like a gift from heaven.
Encouraging the caregiver to get out of the house and do something for themselves can also be helpful. They may be reluctant at first, but if a trusted home health aide or other family member is staying with Mom and she is safe, a gentle but firm push out the door can often give them the strength they need to keep taking care of mom when they come back.
As nurses, we need to show the caregiver that they are no less devoted or loving by accepting help. By giving the caregiver permission to express feelings of frustration safely in an accepting environment can alleviate the feelings of anger and resentment. Putting family members in touch with support groups can also be enormously helpful. By sharing experiences with other people, they can accept that many of their feelings are normal and lessen the feelings of guilt they may be hiding.
Managing stress on a day-to-day basis is also something the nurse can help with. By teaching the caregiver relaxation techniques we can give them a temporary respite when leaving is not a viable option. Deep breathing can be used to create a feeling of calm when confronted with overwhelming situations, playing soothing music in the patients’ room may not only benefit the care giver, but calm the patient as well.
I am also a big advocate of fresh air and sunshine. If safety and the weather allow, put mom in a wheelchair and take her for a walk around the block. She will enjoy the change of scenery and the caregiver will get a chance to work off some steam, and perhaps gain the opportunity to enjoy Moms’ company for a change. Playing cards, doing puzzles or teaching mom some simple video games may not only lower stress levels all around, but may help to improve hand -to -eye coordination, and mental awareness.
If the patient is cognitively impaired or socially inappropriate, a spin around the block in a wheelchair may not be appropriate, but perhaps sitting in the back yard under the shade of a tree, or on a screened in porch may be possible instead. Less mentally demanding activities like manipulating play dough or folding laundry may help to distract the patient for short periods and lessen the frequency of loud outbursts. If the patient enjoyed a hobby or activity once before, the same activity may be reintroduced, perhaps on a smaller scale.
Hand crafts that do not involve sharp objects can often be enjoyable for both the patient and the caregiver. Going through boxes of old photos together may jog some pleasant memories as well.
Lastly, it is important to give the care giver the all-important pat on the back. “Your Mom looks great; I can tell you have done a great job” can mean a great deal to the caregiver who often feels they haven’t or cannot do enough.
In addition to nursing care, VNSW provides a full range of rehabilitative therapies, social work and home health aide services. With its dedicated Mental Health Home Care Program, Visiting Nurse Services in Westchester emphasizes treatment of the whole person with the agency’s core multidisciplinary approach. For details, visit www.vns.org, call (914) 682-1480 Ext. 648 or e-mail MentalHealth@vns.org.